I go something like this.....

Razzleberry · Puppy Joined: 12 Jun 2006 Posts: 201

Oluwa so sorry you're itching and scabby and miserable. I have no advice for you but lots of sympathy for you and your poor skin. Maybe a biopsy is the way to go ...at least an answer one way or the other. Let us know how it goes OK?

Wow a doc who says you don't have to pay next time if this time doesn't work??? Amazing.

Miss your emails. Now that I'm back to civilization where high speed internet is everywhere let's get back in touch.

Oluwa · Posted: Fri Oct 03, 2008 3:52 pm Post subject:

Hey Razzle....yes, isn't that something..no fee, but I think he meant he will just wave my copay.

I read in another place of you holding your tender little granddaughter..oh, how sweet it must have felt to hold a life, so dear, so small...in my prayers she is...

Hey Hatlady....

Oh yes, I know the Giardiniera vegetable mix, on fresh chewy Italian bread, swiss or provolone cheese. I like a little greasy deli meat now and then. Here, I try to make my own mix as I haven't been able to find it here and usually I add a variety of olives...

I continue to go something like this...

Well, two appointments down.... Rheumba today.. took two hours to be seen...egads. I am still itchy...hummm not a Lupus rash. He thought perhaps a contact rash, dermatitis. Humm, skin contact?#@!

Being itchy is miserable. When I rub alcohol, oh, the horrible burning, the screaming burn brings relief from the itch...really...

Well, I stripped the beds, rewash my daily lounge wear, new soap, rinsed twice..currently drying. See what this evening brings while I sleep. Allergen free clean clothes and Lunesta. My new drug I prescribed for my aches and pains. Seems to be due to my less then a full night sleep, he suggested.

If the crud on my body is still there by Monday, I am going for that chunk removal.

Again, no to steroids. Running my blood for TSH levels.. thyroid test and calcium. He said my blood test have been within range, slightly over but not enough to warrant this fatigue, headache joint pain that I felt was my norm.

I told him if this is my norm I don't think I can live a life like this...each day I feel like I slip a bit further into being a dull, lifeless human being...My energy spurts have been long forgotten. I miss the swirl and skating on my hardwood floors..wheeeeeeee. The last time I felt really good, not the 'norm' normal was last summer....

While I swam I felt free, but once you walk the cement, then into the house I was reminded of the aches...

Went biking for 25 minutes this evening....the neighbors loved my blinking red safety light. Move the body to find energy I hope...

My eye appointment, another 90 minutes of my life I'll never get back, yesterday. I asked the Ophthalmologist why the pain in my eyes and the extreme light sensitivity, natural or artificial. Honestly, I don't know he uttered... I said, well, could you tell me someone who would. He didn't appreciate my humor, maybe because I was mostly serious. I offended him.

I think I offended him and his staff that day...just so tired of waiting. Like as if I have another important engagement. He is off my next year appointment schedule...erase, erase.

I passed the Plaquenil eye exam.

Monday, pear day...I get clammy, a bit of nausea thinking about it..fear. Snap the blinders on, move forward. Mush.

Enjoy the night...keep well I pray for everyone..
Hugs,
Oluwa
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Razzleberry · Puppy Joined: 12 Jun 2006 Posts: 201

Hey Oluwa,

Just wanted to let you know you're in my thoughts. I hope the gall-darn itching is getting better. Don't they often prescribe prednisone for reactions such as that? Maybe a short week long 10 mg would get it under control and gone?

Try not to worry about the gyne apt on Mon. If the "pear" is causing that much grief and pain maybe it's time to bid it adieu. Mine went 10 years ago now and I am better for it. Recovery is sometimes difficult tho (regardless of what the male doc may say) ...although I have heard from others that the new minimally invasion op is a lot easier on you. Just know that you need to do what's best for your whole body and only you know exactly what that is.

Thinking of you a lot.

jaideni · Big Hamster Joined: 16 May 2008 Posts: 94

Oluwa you sound like I do. I can not wait for the return of normal. I am so tired of my never-ending flare. I have the same problem with my eyes for the last few years and I was told that it must be some kind of allery and I also have a floater that I was told would go away within six months, its been two years now. My floater is now my best friend always with me no matter what. I read one day about how Regis had a floater in his eye and how common it is among the elderly I am 26 why do I have it noone knows nor do they care it'll disappear one day, sure it will. Hope you feel better whenever i feel down I come back to this site, which unfortunately is becoming more frequent, but reading about you guys and how much strength you seem to have always helps me and I feel like Yes I can make it through this today. Have you ever tried the Aveeno brand rash cream. I dont remember the exact name of it but it helps my strange breakouts I use it more than suggested but the relief is well worth it. Good Luck

mnjodette · Posted: Sat Oct 04, 2008 2:49 pm Post subject:

Oluwa, just know that you'll have lots of friends with you in spirit when you see the GYN. You'll know the right decision to make.

Sorry the eye doctor was of no help. Some light sensitivity is natural with age; some is caused by medications. Probably lot's of other reasons, too. Is there a good eye clinic in your area....one that has a number of eye specialists? That may be a better choice for a stubborn problem. They'll likely have seen it all.

There just has to be an answer to this itching!! I hope it's a contact problem and the new soap, allergen free clothes, etc. will do the trick. Here's to a good scratch...but gently!

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Faith · Cobra Joined: 25 Sep 2007 Posts: 461 Location: California

Hi Oluwa,

I am sorry to hear about your itching. Have you asked if it might be psorasis? I have bumps on my scalp that itch and are only bleed when itched. I have to use a tar shampoo and some other liquid to calm it down. I hate it. I think the RX is Elidel but it comes in a generic (cheaper). It not under control, they turn into white flakey scabs and are considered "plaques." They can become serious very quickly. Stay on top of it. I have read that Plaquenil makes it worse; can't stop taking that.

I will keep you in my thoughts and prayers Monday. When you don't know the answer, seek and ask Him.

I am a little behind on reading on the forum. I have visiting that nice island we created the Island of Denial swinging in the palm tree and enjoying margaritas. Diagnosed with Anti-phospholipid syndrome after several episodes where I felt like Alice in Wonderland. I am praying for you!!

Take care & God Bless,

Faith Cool

Faith · Cobra Joined: 25 Sep 2007 Posts: 461 Location: California

Hey Oluwa,

Forgot to post, I don't turn lights on in my house and can't walk outside without dark sunglasses. Talked to opthamologist from UCLA and this is normal for patients that have Lupus. It seems to get worse as time goes by; I don't get it.

Take care,

Faith

NoodleMom · Show Poodle Joined: 09 Nov 2007 Posts: 256

How is everyone? I am very exhausted and still dealing with a lot of pain.. Just got back from my rheumy. I do in fact have lupus. She is putting me on steroid and plaquenil. Do you know of the side effects and he benefits. What is it supposed to do for me. I got a copy of the lab report. I will have my HubbyMan put them in here somewhere so that someone, I think its Saysusie who is very knowledgeable in deciphering them.

K

Oluwa · Posted: Mon Oct 06, 2008 12:08 pm Post subject:

Hey you, everyone...

Wow was this biopsy painful, maybe the last one never did it properly or this one pared my pear too much..humm. The nurse said there were four of us having biopsies today.

During the procedure ..you'll feel a pinch..oh, that wasn't bad I thought. The Lortab worked. Then I screamed, Gawd...sheeesh..what the...Oh, Lord....wow and I thought of every foul word as my toes curled and flexed, while my hands had the death grip on the table. Wondering how I maintained control over my verbiage. $#@*@! The pinch was the numbing agent...the best had yet to come.... I even felt nausea.

After she was done, I assumed she did the procedure on the woman in the room over because I heard.. Oh, gawd..ouch, ouch....oh, oh...no. I prayed for all four us that minute. How life changing this could be for anyone of us, when the results come back...

They said because I hadn't had children nor been dilated that is why it was painful. Not the pinch but the going in with the miners head lamp and gadgets...

I have an appointment to discuss the results on November 6...so long, so far.

I popped another Lortab when I returned to my car...

After 15 minutes it was like it never happened. I went to Dillard's, tried on at least 20 items and left with two Fall jackets, one sweater and slacks in tow. Love a good sale.

I feel like Sybil...many emotions in one day...

My rash seems to drying up like a summer of no rains lake bed...shrinking. Instead of sauving it with antis and lubes. I took three T-shirts and modified them so they fit snug around my trunk, wrapped my elbows with it. And wore my husband's cotton, seamless shorts styled underwear to keep my clothing form rubbing and aggravating it worse. Either it is working, or it is running its course.

My PCP when I saw him last week, specifically said he did no want to put me on steroids, but yet would let me use a whole tube of cream...humm. My skin looks a dirty stained brown now...Actually around my belly button looks like the top of a huge bagel encircling it..The color, brown, and the white...fat. A big circle from side to side and almost to my girls and to my girlie too.

Faith...

I miss you posting. I wonder often how you are. I paddle over to the Denial Island often too. Sometimes it is for a minute, times it had been all day. Those days... I curl up in bed and watch mindless TV.

I was thinking to purchase the tea tree oil for it...is it coal tar you are using.

Oh no, antiphospholipid syndrome...head hugs...what happens when you have an episode. It just doesn't seem real or right, that there is no cure or a way to stop IT from advancing at least. No matter how big or small our symptoms are times I feel it is just pure torture almost everyday..no wonder we deny, run off with the Queen of Hearts...

The tech at the Ophthalmologist office, when she tried to open my eyes, pushing my lids up, I said, gosh you're hurting me. Felt like she was trying to pop my eyeballs like grapes. She attempted again, not with much care....finally I said forget it for the Glaucoma pressure test. Maybe I am just a big boobie.

My eye pain has subsided a bit, but thank whoever that invented sunglasses. Do you wear them while on the PC too..I do. Times my malar flares while on the PC too. After an hour my nose and cheeks looks like Santa..

Jody...

Thank you for your thoughtful words...times I think I am making much ado about nothing. Just too many things, small woes to tend with at once. Like last night I had severe sharp pain by the right side, towards my center.. of my rib cage. Lasted about 30 minutes. It happened while I was talking with my sister, a RN who though I was passing a gallstone.

At first when it started I thought oh, no..GERD...an ulcer or gastritis in my duodenum. Pain worse than the biopsy. My sister said it sounded like it was in my gallbladder area. Had any grease today? Nope. Take clear liquids she suggested... I said I gotta go...

My husband was on the PC researching it, I was moaning, doubled over like a roll away cot in the background..he was saying he was taking me to the hospital. I am yelping, no, people have these all the time. He read take Tylenol and clear liquids too. It past but surely the Tylenol couldn't have worked that fast?

Anyone pass a stone? What does it feel like?

I only read Lupus and pancreatitis...Lupus and gallstones, nope...but they pass through the same, common tube..hummm.

Jaideni...

Feeling down today...head hug. Chronic illnesses cause so much blues, eh? Always wrestling with one thing or another. Too many changes to contend with....but we all some how find our way. I find helping another helps me too. Finding words, things to uplift another, uplifts me too...

Floaters... the kind that look like little clear jelly fish? I had three since I was a child. I always thought it was normal...squiggles floating about, seeing them at the right angle or in the right bright light. Maybe from having them so long, I don't notice them anymore...

Is your vision hazy, any changes there?

I tried straight up oatmeal milky water..nadda...

Razzleberry...

Thank you for thinking of me...

Is that minimal evasive surgery the vaginal hysterectomy. I envision being turn inside out. That would definitely be the way to go if I am able to.

How is your granddaughter? I pray for her everyday...

Well this has been me lately....wish the thrills in my life were more than a rash, biopsy and pain...vacation in 16 days. I'll have new material then. Whoohoooo.....

Be well, I pray for everyone..enjoy this day. I am in my new red sweater...

Hugs,
Love,
Oluwa
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Faith · Cobra Joined: 25 Sep 2007 Posts: 461 Location: California

Hi Noodlemom,

The steroids will remove any rashes or join pain. You will suddenly become the energizer bunny rabbit. I was up all night long; couldn't sleep and the bonus is picking up some weight. I cut my food portions in half and just maintained my weight.

The plaquenil should give you a little energy and build up your tolerance to the sun.

I hope you get to feeling better.

Take care,

Faith Cool

Faith · Cobra Joined: 25 Sep 2007 Posts: 461 Location: California

Hi Oluwa . . .

I miss you too. I am so sorry to hear about the painful ouch, I won't way it. I remember when a dr did something similar to a dnc with no pain block. I sympasize (foggy here-spell?).

I have been paddling to the Island of Denial between naps. No energy; dreaming of swinging from banana trees, sleeping, running on the sandy beach, sleeping. I am glad to hear I am not the only one.

Tea Tree Oil would be good (I use it on diskoid lesions to fade the scars). It's awesome for your skin. Ask your doc for not Elidel (boy was I tired.) but Mometasone Cream 0.1% (generic for Elocon). I looking at the box so I have it right. Tar shampoo can be found at Target or you can purchase Nizoral also. Either helps with the scalp and face. I let it sit for a couple of minutes.

"Oh no, antiphospholipid syndrome." The answer is Vertigo when standing up or bending over. Possible pulmonary embolism, brain anurism (spelling?) Grrrrrr, I am in another fog. Fingers not communicating with the sleepy brain. No bid deal; God doesn't give us more than we can handle.

My foot turned purple Thursday though I didn't hit it. Primary was out of town. Called Hematologist and they said monitor and if it gets worse head to the ER. No ER, I toughed it out and saw primary today. Vertigo is normal, purple foot is slowly fading and doc says it's vasculitis or in laymens terms a broken capillary or vein due to lupus. Again, normal.

I also asked about hearing since there are times when I talk and one ear is closed. It sounds like I am under water. This is due to allergies and Lupus since Lupus patients have numerous allergies. Interesting.

Your tech sounds WEIRD!! You need to come back to CA. lol. just joking. Do they have you look into the microscope thing (a white bowl and you have to click a mouse when you see the lights blinking while also staring at the red dot?) It's called a field vision test i think. I have to have one every year in between the 6 month checkups.

I don't turn on lights; only low lamps everywhere. I wear sunglasses on the PC too. Wow; I thought I was the only one. My eyes hurt really bad afterward too. I get headaches (from the sun) along with malar flares while on the PC or when it is hot even if I am in the shade. It's because of that darn flourescent light they use in the newer monitors.

It's "nappy poo" time as my daughter says. I am glad you are feeling better. It is good talking with you. Keep wearing the glasses; polarized are better per the opthamologist from UCLA. I would see another opthamologist who specializes in Lupus. Is there anyone out there that you know of besides the one you are seeing?

Take care,

Faith Cool

lol (no pun intended) heading for a margarita (in my dreams).

sits_inthe_corner · Posted: Mon Oct 06, 2008 4:25 pm Post subject:

Head hugssss Oluwa

So sorry to ready of your pain biopsy. Sad

I feel you pain having had a few myself.

Hope there are better days ahead, hugssss.
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Oh look ... a cookie

cheryl_v · Posted: Mon Oct 06, 2008 6:37 pm Post subject:

Hi Oluwa, I see you had that app. today. Sorry it takes so long to get those results. I said a prayer for good results.

I do wonder what the numbing agent is for at times. Never seems to dull any pain to me Laughing

. If it is helping, scarey to think of what it would feel like without it. I have my yearly girlie app. in 3 weeks. Always makes me nervous every time. Hope those itchies are going away, said a prayer for that too. Actually been thinking of everyone here and praying for us all better days and less pain Smile

.

mnjodette · Posted: Tue Oct 07, 2008 5:55 am Post subject:

Oluwa, how are you today? I wish you didn't have to wait so long for the results of your biopsy. I just cringed and crossed my legs when I read your description. Yikes, Yikes, Yikes. Shocked

I'm not so sure about your opthomalogist. I have glaucoma and have tests all the time (I have a lot of eye stuff, so go in every 3-6 months.) The test doesn't call for them to hold my eye open at all. I just have to stare into a small, pinpoint of light for just a second (it's very bright...I don't like that part) but I don't have to hold my eye open for it. They also have some other state-of-the-art kind of testing equipment now and are beginning to use that for more thorough tests. You might want to research what's out there in your area.

Hugs to you today...hope you're better.

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Razzleberry · Puppy Joined: 12 Jun 2006 Posts: 201

Oluwa ...ouch the biopsy sounds awful. I thought they were pretty painless ...but I've never had one ...won't either if I have any choice after hearing your adventure.

I always cringe when a doc or medical person says "You might feel some discomfort". In doc language I have translated that to mean "This is going to be excruitiating!"

Some docs think childbirth might cause "some discomfort"!!

Anyway, hope you're having a good day. Try not to worry about the results too much. What will be, will be.